Death & Memory – Past & Present

Autism and Heritage Part 2

Autism and Heritage Sites

In a previous post, I outlined some of my experiences of visiting heritage sites and landscapes with my eldest daughter – Jemimah – who has ASD (Autism Spectrum Disorder, otherwise known as Asperger Syndrome). She enjoys most of her visits to heritage sites, although very occasionally she finds experiences stressful and upsetting as do all kids, but sometimes because of dimensions of her condition. As I identified before, knowing what sites will be engaging and interesting to J, and which will cause her distress and/or disinterest, is unpredictable.

Negative Experiences

The most ridiculously negative experience of any heritage site I have experienced with her was the English Heritage site of Halesowen Abbey which I advocate should not even be advertised for visitors at all. Also, I am still traumatised by an attempt to walk up Foel Fenlli with her a few years ago which was abandoned after 100 metres due to J and two of my other kids collective objection to thistles and sheep poo! All families experience such debacles!

Many heritage sites offer us mixed experiences and the situation can move from fun and positive to negative and stressful within seconds, depending on J herself and engagements with other people, barriers, displays and the monuments themselves. For example, our attempt to navigate the new Stonehenge visitor experience were far from stress-free, with points of contention being the land train and its automated messages and the ropes around the pathways that circumvent the monument. Similarly, Stokesay Castle gave us an even mix of positive and negative experiences: she enjoyed the castle itself but not the moat, the activities laid on for kids or the crowds around the gift shop and toilets. Yet, these negative experiences are rare, and at a range of sites from hillforts to castles, dolmens to abbeys, cairns to country houses, J enjoys the outdoor experience as much, and in many cases more than, my other kids.

Kidwelly Castle

J and her siblings exploring a throne in the tower of Kidwelly Castle

However, I think it is worthwhile mentioning another recent visit to a Cadw site that gave us a distinctively problematic experience. We were visiting Kidwelly Castle, Carmarthenshire, on a weekday during school term-time and Jemimah had special dispensation to be out of school.

Kidwelly Castle is a fabulous castle for any family to visit in many regards and we enjoyed our visit on the whole. J enjoyed the outside, exploring the Gwenllian memorial and the riverside walk. She also enjoyed exploring the weird art and many rooms and staircases. I will be writing further entries about the castle’s material and heritage dimensions in the future.

The Highest Room of the Highest Tower

However, our visit recently happened to coincide with a school visit by a local primary school kids who were the same age, or a little older than, J herself.

The combination of architecture and crowds combined at a specific moment to cause J problems. We had reached the highest point of the highest tower (as Shrek would have it) and were hoping to descend. Jemimah can ascend spiral staircases without fear now, and descends them cautiously but confidently if she has no time-pressure. If she gets nervous, she comes down seated, step-by-step. However, with the school kids queuing to ascend and descend, she felt restricted and rushed and responded adversely to my encouragement for her to descend at a modest but steady pace. This had three results:

J went into uncontrolled meltdown at the top of the spiral staircase and refused to descend, leaving us confined at the top of the tower where she knew she could not physically escape from quickly and only got worse and worse;

J was then exposed to the scrutiny of the school children, the teaching assistants and teachers when we were in a place where we could not easily escape from. During our final descent when we had to pass even more kids and their assistants/ teachers

Because I had to stay with J, I had to let my other kids descend without my help and out of my supervision, putting them at (an admittedly quite mild) risk in a large, complex and open heritage site.

Our otherwise stress-free visit rapidly became rather more stressful, with Jemimah sobbing and screaming uncontrollably from the battlements.

View from the spiral staircase that caused J so much distress

Positives

There were positive sides to this situation. One teacher/teaching assistant asked if we were ok. A lead teacher apologised afterwards for disturbing our visit (which to my mind was kind but completely unnecessary; they had a right to be there too and Cadw sites depend on school visits heavily to justify their existence). More immediately, whilst Jemimah was melting down, some of the female pupils, aware she was English medium rather than Welsh, expressed their concern in English and one or two asked whether there was anything she/they could do to help (this was very touching and showed care and understanding far greater than their years).

Negatives

On the flip-side, most people ignored J. Furthermore, one of the teaching assistants felt compelled to express their view within earshot (to paraphrase) ‘children like her shouldn’t be brought to sites like this’: I presume not intending us to overhear. Also, some of the groups of schoolboys laughed and jeered at Jemimah, presumably imagining she was displaying cowardice or infantile behaviour; they were not reprimanded and teachers made no attempt to explain to them what might be happening to J.

Reflections

While no serious harm was done, exposing J to the scrutiny of an entire class of kids she didn’t even know, trapped at the top of a castle tower and unable for her to escape the situation and their attention, was very upsetting for her and me. It felt humiliated in some way. I felt at fault for encouraging her to climb up so high. I also don’t feel I should tell everyone we meet ‘my daughter is autistic’, and perhaps that might have helped. I felt like crap for putting J through this and putting her on display.

Despite many dozens of positive visits to Cadw sites, this put a shadow of doubt across my mind. Am I giving her good experiences taking her to all these sites? Might it be better not to bother?

Yet of course it was a very specific scenario unlikely to happen again. In coming days, she explored unhindered and without stress all manner of other castles and sites, including Lamphey Palace, Llansteffan Castle and Manorbier Castle. Since then, she has been to many more sites with me. This all helped settle my confidence as a dad and J has no particular fear or worry about castles as a result of the experience, which is a major relief.

Also, the Kidwelly visit exposed her to the kindness and attention of some children and adults as well as the casual ignorance and ridicule of others. As such, this incident stands as a microcosm of much of our life with Jemimah and its many positive as well as challenging dimensions. She receives so much patience and kindness from others, but also occasional negative comments aimed at us as parents or at her behaviour.

To the Future

This post offers no generalisation or recommendation, no specific criticism or challenge. Let’s be clear: I have no criticism of Kidwelly Castle in relation to autism or as a heritage experience for others. I don’t want to get into the habit of ‘endorsing’ particular heritage sites over others, or claiming some sites are more ‘autism friendly’ than others. Equally though, Kidwelly does share in failing to give a clear sense of expectation and guidance for those with autistic children. Au contraire, I want J to engage and inhabit the same environments as other people, not to be cushioned from life and environments, even if sometimes things don’t go well for us.

Still, this unusual, perhaps unique, instance does reveal the challenges of tackling complex three-dimensional heritage spaces with autistic children. If I could reconnoitre all sites we plan to visit in advance, that might help. If there were some indication of restricted and noisy spaces, that might help, rather than simply a description of disabled ‘access’ for wheelchair users.

Anyway, the incident reveals the bottomless propensity of children and adults to both pass judgement, display awkward indifference, or (sometimes) to offer support to Jemimah as she navigates her distinctive engagement with material culture and complex architectures, both ancient and modern.

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Published by Prof. Howard M. R. Williams

Researcher and teacher in early medieval archaeology, contemporary archaeology, mortuary archaeology, the archaeology of memory and the history of archaeology. MA Archaeology of Death and Memory
View all posts by Prof. Howard M. R. Williams

6 thoughts on “Autism and Heritage Part 2”

As an adult with this, I pose that instead of taking in the whole experience in one day, just stretch it out. Give her time to adjust to the place, then when there are less people, go and enjoy it more.

It was telling that you felt her meltdown was after something you said – your words were too much verbal input. That’s telling in that she may need things to help her. Things like sunglasses – Sun is always too much for us. She’s visiting a new place – the sights, smells, textures (even of the ground) will add up. Give her comfortable (for her) earmuffs.

I don’t know if you know this, and I’m not implying you don’t, or that it’s a failure on your part, but her meltdowns don’t come from one thing. They come from EVERYTHING. Give her breaks! She’s also aware of being made fun of.

It’s important you know that if she doesn’t actually want to go, don’t make her go. Tell her very literally, that she doesn’t have to go and that are no consequences if she doesn’t go. You need to know these meltdowns and what leads up to them are traumatic. I, j u st like most autistic adults, have Post Traumatic Stress Disorder from stuff like this.

I’m not saying you’re making her do things – I’m saying she probably doesn’t possess the soci understanding that she’s safe to decline anything unless you tell her and back it up. Showing frustration and humiliation is only going to make her feel guilty… and when we feel guilty, we equate it with being bad/evil people. Please work on heading that off. I don’t want another one of us to end up the way most of us do. It’s doable when somebody listens, really listens, to us adult autistics. Most don’t.